ASPIRE: Autism Strategies for Parents to Improve Relationships and Experiences.
The development of a training and support programme incorporating Video Interaction Guidance for parents of young children with a diagnosis of autism in a rural Scottish Local Authority (Paper delivered to Video Interaction Guidance: Closing the Gap. 7th AVIGuk International Conference 2017, Glasgow.)
Heather Sked, Area Principal Educational Psychologist, The Highland Council; Shiona Alexander, Educational Psychologist, The Highland Council; Claire Wraight, Trainee Educational Psychologist, University College London.
Abstract: As part of national and local efforts to close the equity gap and support children and young people with a diagnosis of autism to achieve their potential, multi-agency staff in a rural Scottish Local Authority are developing a training pathway for parents of children with autism. ASPIRE (Autism Strategies for Parents to Improve Relationships and Experiences) is a new initiative within this pathway, incorporating Video Interaction Guidance both on an individual basis and within a group setting. Evaluation of the pilot programme demonstrated that parents felt empowered and supported both immediately after the intervention and also two months later. Video analysis also demonstrated increased attunement between all parents and children. It would be useful now to measure ongoing impact of this parent-mediated approach through planned, longitudinal research as the programme is rolled out across the authority.
Nationally and locally, it is recognised that there is a need to provide support to enable individuals with autism to achieve their potential in life. (The term ‘autism’ is used throughout this article, except where different terminology is used in direct quotations from other publications.) Recommendation 10 of the Scottish Strategy for Autism (The Scottish Government 2011, p.78) is that, ‘Agencies and services develop a menu of interventions including advice, therapeutic interventions and counselling for children, young people and adults with ASD, that are appropriate and flexible to individual need.’ This also fits with the priority in the National Improvement Framework (The Scottish Government, 2017), ‘Improvement in children and young people’s health and wellbeing,’ (p.2) and the focus on parental engagement: ‘We want to improve and increase the ways in which parents, carers and families can engage with teachers and partners to support their children,’ (p.9).
Recent research (Green et al. 2010; Pickles et al. 2016) has indicated that adopting a parent-mediated approach in interventions and focussing on developing the prerequisite elements of communicative interaction can have long-lasting impact on the development of autistic children. This research has received widespread attention, being reported by the BBC in October 2016 with the headline: ‘Super parenting improves children’s autism’ (BBC 2016).
Video Interaction Guidance (VIG) is an approach which could fit this description. A VIG guider takes a short film of interaction between two participants focussing on an agreed aspect, then identifies short clips where the interaction is particularly attuned. These clips are shared with one or more of the participants in shared review, where the VIG guider supports the participant(s) to see and describe this attunement for themselves. This provides a basis for discussion about how to build this attunement further. This cycle is repeated, often three times. Essentially, VIG focusses on what could be described as the prerequisite elements of communicative interaction: the principles for attunement (Kennedy, Landor and Todd 2011). Attentiveness and the process of encouraging and receiving initiatives from interaction partners are fundamental in this. There are numerous examples of VIG being used successfully with parents to support interaction with children (Kennedy et al. 2011) and therefore it can be described as a parent-mediated intervention. It has also been shown to be an effective intervention to support parental understanding of an autistic child (for example Gibson 2013), confirming that supporting the development of attuned interactions is relevant for all.
Furthermore, VIG is an intervention which fits the recommendations in the NICE Clinical Guidelines 170 (National Institute for Health and Care Excellence 2013 pp.10-11). These guidelines recommend that interventions to address the key features of autism in children should:
- be adjusted to the child or young person’s developmental level
- aim to increase the parents, carers, teachers or peers’ understanding of, and sensitivity and responsiveness to, the child or young person’s patterns of communication and interaction
- include techniques of therapist modelling and video-interaction feedback
- include techniques to expand the child or young person’s communication, interactive play and social routines.
The intervention should be delivered by a trained professional.
The Local Authority where the ASPIRE intervention has been developed has used the National Autistic Society’s EarlyBird and EarlyBird Plus training programme to support parents with young children with autism for some years. EarlyBird is delivered to parents in a group setting, over a period of several weeks, focussing on various aspects of autism and including the sharing of videos of parents and their children, although not using VIG. Although the programme was evaluated well by parents who attended, and indeed is very well evaluated more widely (for example Clubb 2012), the constraints of the programme did not match with geographical needs or training capacity of this large rural Local Authority. The need for an alternative to meet local needs has been recognised for several years. The multi-agency Autism Training Group in this Local Authority has been working towards developing such an alternative, employing the Model for Improvement framework to make a small test of change, using the Plan-Do-Study-Act cycle.
The training group has been working towards developing an autism training pathway, thereby fulfilling an aim included in the Local Authority’s Integrated Children’s Services Plan. As part of this, a subgroup of the Autism Training Group has developed training for parents of young children with a diagnosis of autism called ASPIRE (Autism Strategies for Parents to Improve Relationships and Experiences), using the skills and expertise regarding autism and VIG of multi-agency staff across the Local Authority. The pre-school home visiting teacher co-ordinator, who was one of the EarlyBird trainers in the Local Authority and also a trainee VIG guider, made a strong case for including VIG in this training to provide a more structured way to use video to support the development of parent-child interaction, as she had witnessed the increased understanding and change following VIG in a parent who had experienced EarlyBird with her first child and then VIG with her second child.
The team decided that they wanted to provide opportunities for parents both to attend strategy-based workshops on a range of pertinent themes and also to experience VIG. It was agreed at this stage that combining these two elements in one course could make the training very lengthy and therefore put unrealistic time demands both on parents and trainers. Therefore a model for the pilot of ASPIRE was developed, comprising core training for all parents followed by two routes (Group One using Video Interaction Guidance, Group Two using workshops to focus on strategies) to develop parent networks, competence and confidence in interacting with their child. Training using both routes has been delivered once, centrally in the largest urban area in the Local Authority, as a small test of change.
Day One of ASPIRE was core training for all: the ‘Understanding Autism’ training event which was already being successfully delivered for parents and professionals across the Local Authority. An ‘Understanding Autism’ day was arranged specifically for the ASPIRE parents and was delivered to both groups together. This was also attended by all the professionals who would be working with the parents during the ASPIRE programme. This is an interactive day of training including sections delivered by a range of professionals: introduction to autism (specialist teacher); communication (speech and language therapist); sensory issues (occupational therapist); challenging behaviour (educational psychologist); practical strategies (delivered by all). This was also an opportunity for the parents who would be experiencing VIG to meet their VIG guiders, who were all either educational psychologists or pre-school home visiting teachers.
The programme for Group One ran for seven further weeks. On Day Two, there was a presentation about the principles for attunement, including films of a parent interacting with her autistic child, without a toy in one film and with a toy in the other. Parents then discussed the interaction targets they wished to work on with their designated VIG guider, recording this on a Target Monitoring and Evaluation (TME) form (Dunsmuir et al 2009). (This form was also reviewed by the guider and parent at the end of the programme so that parents could rate their progress with their targets on a scale of 1 – 10.) Parents and guiders also agreed the focus for their initial video; they were encouraged to choose an activity involving one-to-one interaction between them and their child without toys for this video and it was suggested that they might want to choose an activity involving interaction including toys and/or other people in subsequent videos.
In Week Three, VIG guiders made home visits to the parents to make their first videos. In Week Four, Group One met together to review these edited videos. In the first half of this session, VIG guiders worked with the parents separately to review their individual videos. During this period, parents also chose an activity to focus on in their second video and were encouraged to choose one video clip that they were particularly pleased with which they would like to share with the rest of the group. Then in the second half of the session, all of Group One came together. Each parent/guider group shared a video clip with the rest of Group One, leading discussion about what had gone well in the video. Despite initial nervousness, each parent was willing to share video. As the session progressed, the comments the parents made gave a strong impression that, through sharing and discussing videos, they could see the similarities in the experiences of other parents with their children and also strengths in what they were all doing to support interaction with their children. At the beginning it felt like much of the discussion was coming from the guiders but as time went on the parents spoke up more. The experience of shared group review seemed to extend the self-confrontation element of VIG (Cross and Kennedy 2011), as parents were confronted through the videos not only with examples of effective attunement between themselves and their own autistic child but also with examples of effective attunement between other parents and their autistic children, demonstrating to themselves through their own interactions that this was achievable for them all. For example, throughout the videos there were numerous examples of extended play, turn-taking and shared attention when the various parents encouraged and received their child’s play initiatives. This seemed to engender a sense not just of individual empowerment but also group empowerment. It would not be an over-statement to say that there was a sense of shared joy in the room at these times.
Two further cycles of videoing and shared review took place over Weeks Five to Eight. In their second and third videos, parents chose to include activities involving a toy or game and/or interaction including other family members, thereby exploring their attunement with their children in increasingly complex and socially demanding situations.
Meanwhile, Group Two had six workshop sessions focussing on a range of practical strategies including communication, play, behaviour, occupational challenges, social stories and a final question and answer session. These sessions were led by an autism practitioner and a speech and language therapist, with additional input provided in some sessions by a specialist autism teacher and an occupational therapist.
The hoped-for outcomes for the whole ASPIRE programme were:
- Reduce parental isolation.
- Improve attunement between child and parent/adult.
- Improve management of behaviours.
- Lessen the impact of autism on communication.
- Increase parents’ understanding of autism.
However not all of these outcomes would be addressed in the VIG workshop which focused on two of the above outcomes: reduce parental isolation and improve attunement between child and parent/adult. These two outcomes will be discussed.
A mixed method approach was used to evaluate the VIG workshops. This included target monitoring evaluations (TMEs), standardised questionnaires (Parenting Stress Index, Parenting Scale, Eyeberg Child Behaviour, Strengths and Difficulties Questionnaire), non- standardised questionnaires (Parent Experience Questionnaire), semi-structured guider and parent interviews and video analysis. The ASPIRE team had made contact through the AVIG website with a trainee educational psychologist (TEP) at University College London, who wanted to evaluate a project where VIG was used to support children with autism. Because the TEP needed VIG case studies of families with children who had been diagnosed with autism this collaboration made thorough evaluations possible. In addition, ten weeks after the end of the programme the VIG group (Group One) and the practical strategy group (Group Two) were invited to join separate guided discussion groups as part of the Validated Self-Evaluation of the Psychological Service in this Local Authority which was led by Education Scotland.
Each family met their guider and targets were agreed at the end of Day Two when there was a presentation about the principles for attunement. The targets agreed variously by parents and guiders were: better communication, better interaction and increased engagement. The targets were then rated on a scale of 1-10 at this point to indicate how the parent currently felt they were doing with this target and what point they hoped to get to by the end of the VIG intervention. The targets were rated again after the last session had finished to indicate the point that parents felt they had reached.
The standardised questionnaires were chosen and scored by the TEP. They were administered by the ASPIRE team on the Understanding Autism day at the start of the intervention and on the last day of the intervention. The non-standardised questionnaire was administered by the ASPIRE team on the last day of the intervention.
The TEP used thematic analysis as a method of identifying themes / patterns across this set of data. Using the phases of thematic analysis described by Braun and Clarke (2006), a six step process was used to generate themes.
The film analysis was carried out by the TEP using a coding sheet for the attunement principles 1) being attentive 2) initiative and reception 3) interaction 4) scaffolding. The first 10 minute film and the last 10 minute film taken by the guider were rated. At 2 minutes, 5 minutes and 8 minutes the film was rated for the above attunement principles for 1 minute in 10 second intervals. Another rater was used with high inter-rater reliability reported.
Guider and parent interviews
The guider and parent interviews were done on the last day of the intervention by the TEP.
Guided discussion groups
The VIG guided discussion group was facilitated by a VIG supervisor unknown to the group and the practical strategy group was facilitated by the Development Officer for Support for Learning, also unknown to the group. Questions asked were: which parts of the ASPIRE course did you find most helpful, what was the most important thing you learned, what strategies from ASPIRE have you been able to incorporate in everyday life and what else on reflection would you like to be included in the future?
In total five families, including two couples and a mother and her mother (i.e. maternal grandmother), participated. Two children were aged 3 years, one 5 years, one 6 years and another 8 years. All children resided within the Local Authority area and had a fairly recent diagnosis of autism.
Each parent rated an improvement in their target.
Baseline average = 3.2 Hoped for average = 6.6 Achieved average = 7.4
Averaged difference between baseline and achieved = 4.2.
Parenting Stress Index; measured parents’ reported levels of stress in relation to their child’s behaviour – 1 significant, 1 opposite direction, 2 not significant.
Parenting Scale; measuring parents’ perceived parenting style – none significant.
Eyberg Child Behaviour Inventory and Strengths and Difficulties questionnaire: measured parents’ report of frequency of their child’s perceived problematic behaviour – 1 significant for both questionnaires, 2 not significant, 1 did not hand in this questionnaire.
Non- standardised questionnaires
The themes identified were similar for the parent questionnaire and the guider interviews.
- Parents’ confidence increased; they became aware of their own skills; enjoyment; unsure at the start of the intervention.
- Parents saw their interactions more positively; video evidence was seen as important.
- Importance of support from the group and guider.
Table 1.1 Video Analysis Pre- and post- comparisons were made between the frequency and type of attuned interactions. The percentages in the table below refer to frequency percentages in the minute analysed.
|ID||Principles||Session 1 (pre)||Session 3 (post)|
|ID 1||Being attentive
Initiative and reception
|ID 2||Being attentive
Initiative and reception
|ID 4||Being attentive
Initiative and reception
|ID 6||Being attentive
Initiative and reception
Guided Discussion Groups
Parents from both groups spoke enthusiastically about what they had learned in their groups. They had all found their groups supportive. However, each group felt they would have liked to have had the input which the other group had in addition to the input they had received in their own group. The VIG group felt they had more knowledge and understanding of their own child’s autism and felt more confident in their own interactions with their children but would have liked more knowledge of autism-specific strategies. The workshop group felt they had good knowledge of autism-specific strategies but felt less confident in their own ability to put these into practice with their own children. Specifically, they would have liked:
- ‘strategies for both groups and in particular strategies on what video is highlighting to move forward;’
- ‘personalised support strategies;’
- taking time after the VIG session to talk about strategies that might help.’
Discussion of Results
Hoped for outcomes for the VIG workshop; 1) reduce parental isolation and 2) improve attunement between child and parent/adult.
- As can be seen from the thematic analysis of the non-standardised questionnaire given at the end of the intervention and the guider interviews, one of the main themes identified was the support given by the guider and the group. Many of the parents’ comments indicated a reduction in social isolation e.g. ‘’The most valuable thing to me was to have a ‘real person’ – seeing me interacting with my children and being able to show and explain how that interaction went via the video clips….I had a good relationship with the VIG guider – we immediately hit it off.”(ID1)
“Having the right guider helped. I think if I didn’t have such a good bond it might not have gone so well.”(ID4)
“I really liked the group element….watching other people’s videos has been helpful too” (ID6)
‘’Being in a group was helpful – realising I was not alone going through these challenges’’ (ID4)
Strength- based discussion was very strongly modelled by the guiders in the individual shared review which preceded the group review and in the group discussion. For example guiders helped parents to see themselves listening attentively to their children and reading their children’s responses accurately. Guiders noted how well parents managed to skilfully share their attention to include their child who has autism as well as their siblings. This particular group of parents were also very positive. There is clear indication to continue with the group part of the intervention and it will be of interest to see if this result continues with different groups of parents.
2) As can be seen from the Table 1.1 Video Analysis the parents were seen to be more attuned to their children. In particular the ‘being attentive’ principle increased for all four families.
The TEP had additional hoped-for outcomes: reduction in parental stress, decrease in parents’ perception of child’s problematic behaviour. These were evaluated using standardised questionnaires with mixed results.
From the TMEs each parent identified a move towards their own target.
These 5 case studies show positive outcomes. Because the study sample was small and from one Local Authority it is not possible to generalise to the rest of the population. However, it is an important test for change and suggests the pathway should be rolled out further. It was clear from the guided discussion group that parents wanted both VIG intervention and strategies, possibly combined, using video to learn and discuss strategies tailored to their child.
The Act stage in this exciting and long-term programme will be to roll out ASPIRE across this Local Authority and to continue to evaluate it qualitatively and quantitatively. The team has felt encouraged to do this by the positive responses from both groups of parents and the positive results from the video analysis. Of course, this has challenges which need to be worked through. The key current challenges are:
1) How to provide both the strategies workshops and VIG to parents
2) How to deliver the programme to the very remote parts of this Local Authority
3) Putting in place robust and focussed evaluation measures.
1) Parents told the team that what they wanted from the programme was both autism specific strategies (which they got from the workshops) and also the increased understanding of their own child’s autism and the confidence to put the strategies into practice (which they got from VIG). The multi-agency Autism Training Group met to discuss two possible models for providing both strategies workshops and VIG: either meshing the approaches so that strategies are discussed during the VIG shared reviews or offering strategy workshops and VIG shared reviews on alternate weeks. It was decided that the second model will be used for the next round of pilots to make most effective use of both the time and expertise of a range of multi-agency staff who will be involved in delivering various aspects of the programme. This will also mean that the programme will now run over a longer period (9 weeks). The training team has discussed that some families may find it difficult to commit to this many sessions. However, it was also noted that parents who took part in the first pilot talked about wanting the support from the programme to last longer. The impact of a longer programme will be one aspect for further study.
2) In order to deliver ASPIRE to the remoter parts of the Local Authority, multi-agency teams are needed with at least one member trained in VIG. The Psychological Service in this Local Authority has trained all the pre-school home visiting teachers in VIG. These teachers are part of the Psychological Service and live and work in all areas of the Local Authority, both urban and rural. Their involvement is seen as a vital part of the strategy to roll out ASPIRE. Additionally, multi-agency teams already exist delivering other aspects of autism training locally throughout the Local Authority so there is scope to explore further involvement from these multi-agency colleagues in co-delivering ASPIRE in all areas. In the next round of pilots, the ASPIRE programme will run once again in the largest urban area in the Local Authority. It will also run in one or two rural areas with smaller groups of parents. Local groups of multi-agency colleagues have needed to come together and work together in order to make this happen.
3) Whilst the evaluation results from the pilot study were encouraging, the APSIRE development team now recognise the need to be much clearer from the outset regarding hoped-for outcomes and appropriate evaluation measures for these. For example, any questionnaires used need to be sufficiently fine-tuned to demonstrate change that can be seen in a 9 week period Also, although it was encouraging that the video analysis showed change in the hoped-for direction, the team hypothesise that the change might be seen to be more marked if pre- and post- intervention videos of comparable interactions were analysed rather than analysing the first and third VIG videos. It is to be hoped that clarity regarding evaluation measures will produce even stronger evidence of effectiveness which will in turn support the longer term roll out of this programme.
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